“If you change the way you look at things, the things you look at change.” – Wayne Dyer

I have a standing appointment with my psychiatrist every other Friday. The sessions last for 50 minutes. Just long enough for me to get my point across and work through life’s dilemmas.

I have been seeing her for a while now, so she has a pretty good direct grasp of who I am and what I’ve been through. So you can imagine how baffled I was when she said, “Nicole, you are obsessed with your deficits.”

She thinks I identify too much with multiple sclerosis. But let me tell you, I can’t imagine not identifying with it. It has changed the course of my life. I’m just trying to follow its lead.

I see her for adaption problems. She is teaching me coping skills to facilitate my abilities at dealing with what I can no longer do. Like not being able to walk or drive.

She’s not a big fan of my blogging either. Because I’m constantly highlighting my problems, she believes the blogging is keeping my deficits in the forefront. That got me thinking; maybe this blog does cause me to focus even more on what I cannot do. I hope not, because I really love blogging.

My conundrum is that I disagree with her about my blogging but I still enjoy our sessions. She really does help me through the tough times. She pushes me to believe that I’m more than just Nicole with MS. I’m Nicole whom is an avid reader. I am a regular at my local library. They know me by name. What can I say? I’m a nerd at heart.

I also study Spanish, horseback ride and go to the gym twice a week. She made me realize that all of these things are important and they are bigger than my MS. Because of that, I will continue to see her, even though she is not too crazy about this blog.

A bit belated here, but I just saw this post and am, frankly, flabbergasted by what your therapist says about the blog. I see your blog as a positive reaction to your situation. You’ve created an outlet–a really beautifully designed blog–that allows you to express yourself and bring others together. You are using your experiences to build something and to make a supportive community. However much your therapist has helped you otherwise, I’m disturbed by her attitude on this.

While it’s not healthy to wallow all the time, I also don’t agree with others who think that those of us facing painful, degenerative and life-changing illnesses need to always look on the sunny side of life and “get over it.” Don’t think about what you’ve lost! Think of all you can do! Be positive! (This is doubly offensive coming from people who aren’t themselves dealing with a major disability or illness –people like, I assume, your therapist, who, I assume, can walk, drive and hold down a full-time job and still has her working identity as a therapist.) I believe these sorts of exhortations are, frankly, abusive. It carries the message that your suffering isn’t valid and doesn’t matter.

When you write about your difficulties, it helps others who are in similar circumstances. Having followed your blog for a while, I know that you are not always pessimistic. But you are a realist. And by discussing your valid feelings realistically on your blog, you provide an outlet for yourself while helping others who are struggling with similar feelings. A blog is perfect for this.

Also, people who don’t blog don’t understand the community and support it brings. Blogging is a way of reaching out, “meeting” people and ensuring that you don’t become isolated. It’s healthy! I have run across blogs before that are written by depressed or angry people who only stew, rage or simmer in their misery, with no productive commentary or sense of seeking (or wanting) anything positive. Your blog is, most emphatically, not one of those!

I was diagnosed with MS a week ago tomorrow…I feel lost…thank you for blogging because reading your stories helps me realize that I am not alone. I am feeling like someone has thrown a wrench in my life plans…I am trying to adapt a more positive outlook but for now I think I am just trying to come to terms/accept/deal with an MS diagnosis. Thank you again for your blog!

(My opinion only): I really do not believe the therapist’s point of view. In my opinion, you (or anyone) should talk or write about anything on your mind that is bothering you, which definitely helps to relieve stress. Your T should be helping you rationalize your thoughts not be telling you to hold your thoughts inside, not talk about them, or to rid of your thoughts completely. This is not possible.

Hi Nicole I agree with most of the others in regards to doing what is best for you. When I found your blog I was so thankful as I can relate to a lot of your issues. I didn’t always take them as negative but more of an understanding. You have expressed things that I could not. I look forward to your post each week and all that you share. Thank you ! Take care Please do what is best for you. P.S. just thought about this…. is your blog a healthy way of venting about your MS ????? I think that is good therapy !

Lots of good comments here. I side with the ones that are FOR you continuing your blog. We can’t expect anyone not in our position to understand what it’s like to be us. It helps me to have someone to vent to. When someone truly understands, I feel validated and more able to press on and be more positive. If someone tells me not to complain, I am tempted to explain further so they understand. Interesting to me that this professional seems to lack empathy and does not validate your feelings. You’re not paying her to tell her what SHE wants to hear. Everywhere we go, people need to see and hear that we’re doing just fine because they know they could, at any moment, be in the same position as we are and that is uncomfortable for people. Sounds to me like she has no understanding of the grieving process and that she is the negative one. Maybe you can find an empathetic friend and go on a vacation with the money you would have paid the professional.

In a twisted sense, she is right. You focus on what you can’t have anymore…but in another sense, you also have combined the loss of those items & come out stronger for it…using new found stregnth, determination and skills to forge into the future. A bright future…full of possibilites and comfort for others, like yourself, who are experiencing day-to-day survival of a near impossible situation.

Blogging is a catharsis…a tool to purge & to renew. Doctors used to tell us to keep a journal of our feelings & experiences. To chart our progress & to purge bad feelings. How is this any different…except that it’s out in the world…and possibly, influencing others to be brave? JMHO.

I find it interesting what the Psychiatrist’s input is to your experience with MS. When I was in the RRMS stage, I focused on what I could do, not what I couldn’t do. I found that what I couldn’t do …would just fade away. I was able to work and go on with my life with very little or at least minimal acknowledgement of the disease. Now that I am in secondary progression…for 11 years…it has taken on a larger footprint in my life. It is now a matter of safety to acknowlege that I don’t walk well (an understatement) and I love my scooter because it gives me some independence. I need a cane for balance. Now, I used to avoid using my cane thinking that if I became dependant on it…I would have to use it. Well, I do need it to avoid falling and breaking bones. There does come a time in living with this disease to get real and recognize limitations. I also reached the point of telling people I had MS because I didn’t want them to think I was drunk. Someone looking from the outside in just cannot always relate to what our lives are really like…I guess that is why I don’t put Neurologists or Psychiatrists on a pedistal. Just because a Neurologist thought I should take a drug, I made my own decision not to take them. You have a handle on your own mind…do you really need the feedback from a psychiatrist to second guess what is important to you? You have so much talent in putting into words what YOUR disease is like to live with. It is what all of us on this blog so love about what you do.

Nicole,
I hear that you really like the therapeutic process..as I have, over the years, off and on. It’s another avenue for living well, just as you have identified many of your other vocations and activities. I think you also have the added comfort of a supportive family and spouse. finally, you ARE a celebrity magnet – an interesting thing about you. I would consider closely what she has offered about your blog…but,in the end,you must do what pleases you- authority figure be damned. and, at least she tells you what she likes….Jus sayin.

NICOLE, SHE MAY BE RIGHT. I AM NOT THE PERSON I WAS WHEN DIAGNOSED IN 2001, NOR AM I THE PERSON I WAS IN 1971 OR ’81 OR ’91. YES WE HAVE OUR DEFICITS NOW DUE TO OUR DISABILITY, BUT I SURE DON’T LOOK LIKE I DID WHEN I COULD WEAR A BIKINI. THAT WAS RETIRED IN ABOUT 1989, BUT I DON’T DWELL ON IT, JUST AS I CAN’T DWELL ON WHAT I CAN NO LONGER DO. LIFE IS TOO SHORT. I HAVE A NEW GRAND BABY TO ENJOY & MY DISABILITY/DEFICITS ARE NOT GOING TO INTERFERE WITH IT.

Nicole – thank you for sharing this latest realization. I have found that the blogging can absolutely help – but I can relate to what your psychiatrist said. I blog as well, and what I have learned is that MS absolutely affects my experience, but it doesn’t determine it. MS certainly has had a huge impact on my life, but my life is about so much more than MS. Blogging has helped me accept and grow from this. There is so much that you are here to experience, learn and teach – the MS is absolutely a gateway through which you are teaching all of us. Please be kind to yourself along this journey, and please keep us posted!

Nicole, you are very fortunate to have someone to talk to every week. I went to weekly appointments for several years until it became way too difficult to get there. It was nice to be allowed to express myself even if I had to pay someone $200 an hour to listen to me. But, no matter how expert the therapist, I find they cannot begin to grasp what we go through when faced with a debilitating, degenerative illness that totally changes our self-identity. And of course we are each of us individuals, and we need to work through this re-making of our identity in our own way. For me the most painful part of the process was early on when I had to give up all the activities that – in my own mind – defined me. I have gotten past that and for the most part I don’t identify myself as a handicapped person. People say I should write about illness, but I’ll leave that for others and continue to write what I love – fun mysteries. I am not a writer an author with MS, I am simply an author. But no matter how much I don’t identify with illness, it jumps up and hits me in the face every time I go swimming (need a hydraulic lift to get in and out of the pool), go to chair yoga (I’m the only one who can’t do the standing poses), go to a restaurant, a store, or anywhere else.

Anyway, you keep on doing what you do if that’s what helps you. Your psychologist has never been you. Know that your blog makes a whole world of people feel less alone.

I am TOTALLY obsessed with my deficiencies too. How can you not be. I get joy out of other things like my dogs, my bf, nature, and achieving a yoga pose I could not do six months ago, but still, overriding all the great things in my life, there is always in the back of my mind, the person I used to be, the things I can’t do any more. I am much more positive about life than I used to be, but how can you pretend everything is the same?

Its all part of the remit of life innit? you write about your difficulties and this in itself is a coping strategy. She helps you finds ways to do what you need to.
Personally some things I have had to admit i CANNOT do stuff (acceptance) and others I can do – but differently (adaption, imagination, bloody minded stubborness)
So I can have sex (we adapt), can do jewellry making (use larger wire, beads with larger holes and take twice as long as anyone else).
But some stuff, well with the best will in the world…..i can’t do it. And this is not focusing on my limits FFS, its being realistic!!!

Good morning! My thoughts on the situation is for you to do what works for you. Not only does your blogging help you, it helps others.
My husband has MS and is currently fighting an uphill battle. I am a follower of many blogs, support groups etc. Reading helps me to see that my love isn’t alone in this fight. Some reads give me hope, others not so much. Regardless it is life with MS.
I wish you all the best and continue to do what works best for you!
Blessings!!!

Totally get what you are saying it’s our way of coping,venting and sharing within the boundaries of an audience just like you seeking the world through rose colored MS glasses. MS does not define but as my therapist told me I have to stop trying control because MS is in control and I was told to accomodate and acclimate. That makes you sad sometimes then I remind myself I can choose to be happy or sad today..Many days I choose the sad option. So seeing your posts every Tuesday is a new welcome adventure,I’ve read your website as if it was a good novel and it has been. Keep up the good work and there are others doing blogging as well-you are very articulate at helping to display emotions that we cannot sometimes put into words especially when you have memory fog or having a speech moment…!!!!

Nicole, think in this case she is flat out wrong. By blogging you accomplish several positive things:

● You help countless others, myself included, to understand MS is not the end of all things that make life worth living. Your writing is realistic, yet inspirational.

● Your backgound in nursing helps to break things down into English for those of us with no medical training.

● Most importantly, you are doing what YOU need to do as a means of coping and self-expression. Stop blogging only if and when it’s no longer useful to you. You know better than any of your doctors what’s right for you.

I,for one, would hate to lose your voice. But that is a totally selfish response and you have to do what is right for you. What’s funny is your blog posts usually cause me to focus on my abilities rather than my deficits. Amy

I hope I don’t get egged off the blog, but I have to agree with your psychiatrist. Over time, I have had a bad feeling opening the email that takes me to your blog because it is more often than not, pessimistic. I don’t want it to bring me down. However, I am an optimist and so I keep hoping it will turn around and have a more positive slant.
I hope somehow the glass will become half full. It sounds like you have a lot of good happening in your life.
I don’t want to discount the difficulties of living with MS. They are real.

I love the statement “It has changed the course of my life”. MS has done the same to me. My supervisor asked me what my 5 year plan is and all I could think was to still have a job. That certainly wasn’t my thought path 5 years ago. I knew what I wanted to do and how I would continue to progress not just in my job, but in all areas of my life. I don’t have any idea now. Quite honestly, I feel very lost now.

I am so glad that you get the opportunity to talk to someone every other week. I go about one time a month and the sessions are valuable to me too. I have learned so mush about myself and who I am as a person! I am more than MS – now to just remember that all of the time…

Nicole.
How fab of u all that interaction with the able world more activity than most able humans.
Blogging u love and are loved for it! A blog once a week is much the same as the psychiatrist visit ( less expensive) . Blogging allows venting to a larger audience, that find the topic relative….

Hey Nicole,
My psychiatrist has told me the same thing. She doesn’t understand how my thought process about myself has changed but she does understand where I am coming from and she understands WHY my thoughts about myself are different. You are not alone! Please don’t let her words persuade you into changing your blog. I thrive on reading your take on situations and on the comments that others leave regarding those situations. Know that your words really help other MS survivors! Thank you for your words!

I love your blogs Nicole. Please keep blogging because your posts have helped me deal with MS. I can relate to most of what you post. I don’t feel like I am “crazy” because you and others that have commented feel the same as I do. It would be a shame to see you quit. I know I am not the only one that you have helped deal with this MS mess. God bless.